Two People in Love, Dealing with PTSD/TBI

Category Archives: TBI

While we were waiting for the Dodger game to start on Sunday, we saw this commercial for the USO (United Service Organization) that mentioned PTSD and TBI and immediately checked out the website, USOinvisiblewounds.org. What we found was a series of videos that we could relate to and we thought we should share this resource with you all. Please be advised that the videos may trigger some, so be your best advocate and decide for yourself if you want to view them. Or better yet, share the videos with others so that they can be educated on PTSD and TBI.

For 70 years, the USO has been providing a tangible way for everyone to say thank you to our troops. I remember my Grandma telling me stories of how volunteered she with the local USO during WWII and danced with soldiers for “dime-a-dance” parties. Adorable in her elder age, she made sure to point out to me that she “got lots of dimes” and was able to donate all of them to the USO causes. More recently, JR remembers coming home and being greeted at the airport by the USO volunteers with smiling faces, hugs, and kind words. It was a great welcome home for him after being in Iraq. Please feel free to leave comments to share your stories with the USO, we’d love to hear them!

The USO website states:

“Thanks to your generosity, the USO fulfills its mission of lifting the spirits of America’s troops and their families. Through the USO, you touch their lives through an extensive range of programs at more than 160 locations in 27 states and 14 countries, and at hundreds of entertainment events each year. Thousands of USO volunteers do everything possible to provide a home away from home for our troops and to keep them connected to the families they left behind.

The USO makes sure your help goes to those who need it the most: troops serving in combat, their families, our wounded warriors and their families, and families of the fallen.

As a nonprofit, non-political organization, the USO is now, and always will be, about our troops. Wherever and whenever they go, the USO will be there, until every one comes home.”

To find your local USO or for more information on their Invisible Wounds PSAs and programs, check out their website at www.uso.org.

Caryn Lindensmith, who provided our book list, and her husband Stephen

Our friend Caryn Lindensmith: a Navy wife, fellow USC MSW student and blogger of Sunrise Over Me, recently gave us her list of war and military related books. Some of the books are directly relate to PTSD and TBI, but not all. As Caryn explained, “I have included them all because, at least for me, it helps to understand the varying aspects of war from individual day-to-day experiences to the politics of it all.” Most, if not all of the books, are focused on the current war conflicts. As you can see from the extensive list, if we included previous wars, we would have to write a book ourselves. However, in the future, we hope to do a similar list for previous wars and other conflicts.

We have posted Caryn’s list if you are interested in reading more on the subject of war, military, PTSD, & TBI. Please look at the books on websites like Amazon for more information on each book. For us, it helps us to educate ourselves on the subjects and has not triggered us. However, be your own judge and if you feel like a book might trigger your PTSD in a negative way, please refrain from them completely or until a later time.

The books that Caryn has read are indicated by an asterisk (*). We have also read a few of the books on her list (indicated by **). If you have any questions about the books we have read, or if you have any recommendations for us beyond this list, please comment and share them with us. Thank you Caryn for your extensive contribution!

It has been one year and nine months since my husband almost died due to injuries sustained in an IED (improvised explosive device) blast in Afghanistan. It has been almost two years since he and our lives have felt the same. When I received the phone call about him being injured and getting flown to Bagrum Airforce Base back on October 16, 2009, I never realized how much our lives together would change.

When Todd was hurt, he suffered many physical injuries besides the moderate traumatic brain injury (TBI) and the poly trauma to his leg and the damage to his blood count. He also suffered the loss of his friends, Sgt. Gabriel Green and SSG Christopher Staats. They were killed instantly when the Humvee ran over the roadside bomb that was buried underground.

We spent months together in the Fisher House at Brooke Army Medical Center in San Antonio, Texas. It was a place that families of soldiers could stay for free while their soldiers were getting medical treatment. It was a life saver as there was no way we could afford the cost of a hotel for 6 months!

Once Todd was finally released from the Warrior Transition Unit to the Community Based Warrior Transition Unit, we were able to go home and live together as a family. During Todd’s hospitalization, our son Liam was attending middle school. Our friends Jeff and Renee Clark took him in and let him stay with them so he wouldn’t have to move schools. Every weekend I would drive home to Taylor to get our son and then back to San Antonio to visit his father. Each Sunday for a half of a year, we would get our hearts ripped out when we had to say goodbye to him. It was so hard to say goodbye to our son!

When we finally got home, things for us were not that easy. At first, Todd would unlock his hand gun safe each night like clockwork to make sure he had it ready in case something would happen. I know he was just securing the perimeter for us to show he cared, but it made me a tiny bit nervous- what if he forgot to lock it the next day and one of Liam’s friends happened to find the gun sitting in the safe? We never let any kids come into the home and play without us supervising.

Fortunately, sometime has gone by and Todd has undergone some good therapy. He doesn’t get that vigilant about his gun as of late. Sadly, things that never used to be an issue for him now make him shower the world with profanities. If he drops something, it is an “F this”, or” S this” or D this.” I am not a girl that speaks as though butter wouldn’t melt in her mouth. I grew up in New York, in the Niagara Falls area. The women I worked with while being a waitress spoke pretty course, much like Jersey truck drivers. Todd and I did not curse much in front of our child as we knew that they are copycats and we wanted him to use his vocabulary. However, one doesn’t bargain for PTSD or TBI. Both of those help eliminate the filter that is in place when someone is mad. If you add chronic pain to that, and then a good dose of Neurontin (Gabapentin), it totally reduces that mental filter.

For a few months, my husband’s anger escalated to where I did not even want to listen to him anymore. Every day he would talk to me and it wouldn’t really be talking, it was more of a rant as to what really upset him that day. It could be about any certain politician or the person that cut him off behind the wheel a few minutes before. It made it where I felt bad for my son as my husband would let the tiniest things get him very upset. Upset to the point of loud yelling and swearing. Nothing any kid or spouse wants to hear daily.
He did not want me to share with my son the fact that he has PTSD or that he is getting counseling to help him with that and the other issues he is trying to deal with. I told him our son had to hear the truth so he wouldn’t think his father was being a continual jerk to him all of the time. It worked well. Our son has a really strong understanding of how PTSD works and how trust is is really important.

Can you imagine having to hear someone having a rant each day and then later trying to bridge the rant you remember hearing to having the romantic notions for intimacy? It was a struggle. It took a lot of honest talking and a lot of not compromising in order to get the ideas across. It is so easy for me not to share my thoughts, but to just compromise.

We are doing so much better now. I have learned how to understand what he is yelling at me –is it coming from the PTSD space or is it him being truly mad at me for something

Our Guest Blogger: Tara Plybon

Welcome our Guest Blogger Tara Plybon to the PTSD Diary! Like our first guest blogger Megan Byers, I meet Tara in Florida during a Wounded Warrior Wives retreat that we blogged about here: Women of Warriors Retreat. Tara has a wonderful sense of humor and is often able to laugh through difficult times. She also provides excellent advice for fellow wounded warrior wives. Thank you Tara for sharing your thoughts, we hope to have you share more with us in the future! ~ Nicole

Last Saturday, we spent the morning on the beach with an incredible organization named AmpSurf. They are a nonprofit organization that offers free surfing lessons to amputees and wounded veterans free of charge (through scholarships). This was our second time participating in an AmpSurf clinic, and we are still so blown away by what they are able to accomplish. Their founder, Dana Cummings is a former Marine who lost his leg in a motorcycle accident. We found out last weekend that he never learned to surf until after his accident. Since then, adaptive surfing has become his passion, and he has an impressive way of combining his passion for surfing, and his support for wounded veterans.

I have rarely been as inspired as I was watching a paralyzed man ride a wave on his stomach, or a lady stand on a wave with one leg. It’s not about form, it’s about harmony. Dana believes in the healing power of the ocean, and I have become a believer after watching so many disabled people accomplish something that would otherwise be denied to them. It is not important to stand up or “shred”, all that they ask is that you have fun. As I have experienced first hand, it is incredibly fun. There is something so powerful and natural about being in the water on a surfboard. It’s what all of the die hard surfers talk about, the most raw form of getting in touch with nature. The ocean does not judge you, and perhaps the most incredible thing about AmpSurf is that neither do they.

Each participant has a team.

There was a mix of veterans, non veterans, amputees (with and without prosthetics), and some in wheelchairs. The age range ran from early 20′s to mid 40′s, and everybody got their fair amount of time in the water. There was such a sense of cohesion, everyone on the beach clapping as someone came in on their wave, cheering them on. The instructors were patient, talented and passionate, and the setting was nothing short of serene and calm.

AmpSurf is so inspiring that not only have they gone bi-coastal in the United States, they have received international buzz. There was a German film crew on hand for the clinic last Saturday. Dana was so excited to talk about the future, and possibly having an AmpSurf clinic in Europe (apparently, Germans surf on the Rhine River which is said to have some pretty impressive waves).

Dana heading to the ocean

No matter where they go, or how big they get, we whole heartedly believe in what Dana and the team are doing for the disabled, and the therapeutic value of this for our struggling veterans. We plan on going back in June for a three day clinic, which will be our third time going. I cannot wait, I feel like family there. I was so impressed that Dana remembered my name from September, and took a second to greet Nicole and I and shake our hands. That’s just who he is, a down to Earth, peaceful surfer on a mission to share his passion for surfing, and show people that nothing can stop a person who is willing to try.

See Dana’s feature on CNN Heroes below:

Wanna go surfing? Check out www.ampsurf.org to check out upcoming clinics, donate, and apply for grants for those who may need help getting to California for the event. We hope to see you on the beach!

Last weekend, I had the opportunity to go to a Women of Warriors Retreat in Tampa, Florida courtesy of Operation Homefront and provided by At EASE (Equine Assisted Self Exploration). The retreat was held at the beautiful Quantum Leap Farms, “a 501-c-3 nonprofit organization founded in 2000, [that] is one of only a handful of equestrian programs nationwide serving injured and disabled civilian adults and children, military service members and their families.” I had no idea what to expect from the retreat, and I was nervous what therapy and activities we were going to do, but it turned out to be one of the most impactful weekends in recent memory.

Only seven wives of warriors, from across the country (including Hawaii!) were at the retreat and the small group setting made it easy for everyone to open up and get to know each other. We were all from different backgrounds, different military branches, our husbands’ had a variety of military experiences and injuries. And yet, we were all very much the same. In one way or another, we had all experienced crisis situations, centered around our husbands’ injuries, and we have all been dealing with the aftermath. It was amazing to see that even with different backgrounds, when brought together with a common goal of recovery, we were very much the same.

The “weekend” actually started on Friday. I flew out of Bakersfield, CA at 6am and arrived in Tampa around 4pm. I immediately met one of the wives on the shuttle from the airport to the hotel (we were on the same flight and didn’t even know it!). At dinner that night, we all sat around the table and shared our stores. It was just amazing to me that other people were having the same thoughts, concerns and situations as us. As we have learned in the support groups what we attend every two weeks, “We can strength from sharing stories” and over the weekend we definitely did that.

Leading our group were three amazing women: Denise Grant, Carla Staats, and Jenna Miller. Denise Grant works for the Care Coalition and was instrumental in coordinating everything for us for the weekend through Operation Homefront and the Quantum Leap Farm program. She was supportive in our situations and had suggestions for how to manage the bureaucracy that we have to deal with in regards to our husband’s medical issues. Carla and Jenna were fantastic! What can I really say about these women… they listened, provided excellent advice and guidance, and were the main components of the therapy involving the horses. Carla, director of the At EASE (Equine Assisted Self Exploration) program, focused on helping us by replacing unhealthy habits (for example, trying to manage everything in our lives and not taking time for ourselves) with more effective solution-producing behaviors (see the hula hoop theory below). Jenna, co-director of the At EASE program and head therapeutic riding instructor at Quantum Leap Farms, was a beautiful spirit who always had encouraging advice and really made you think about how your actions affect the world around you. This program could not work the way it did without these women and it was a pleasure to be around them for the weekend.

On Saturday, we had the pleasure of meeting the founder of Quantum Leap Farms, Dr. Edie Ebbert Dopking, who discussed TBI (Traumatic Brain Injury) with us, explaining the many functions of the brain and the different types of TBI. It was an extremely interesting lecture, and we had the opportunity to ask personal questions about our husbands to help us understand what they are experiencing.

Our second meeting was with Dr. Bridget Cantrell, a clinical psychologist who specializes in veterans with PTSD. She has writtin three books on the subject, “Down Range: To Iraq and Back” (co-authored with Chuck Dean), “Once a Warrior: Wired for Life” (co-authored again with Chuck Dean), and “Souls under Siege: The Affects of Multiple Troop Deployments—and How to Weather the Storm.” It is amazing how much she knows about PTSD and how it affected our husband. We had the opportunity to ask her advice and she was able to assure us that most of our situations are typical for dealing with PTSD and that solutions are available when we approach the correctly. On the plane flights home, I read “Down Range: To Iraq and Back” and it really helped me to understand what dealing with PTSD is like and how going to combat changes a person. It would have been nice to have read the book before everything happened to prepare for the aftermath, so I would highly recommend it to anyone who’s loved one is going on deployment.

The program is called At EASE (Equine Assisted Self Exploration) but rather than actually ride the horses at the ranch, the wives are instructed to work with the horses in a variety of activities. We had to get to the know the horses by approaching them, introduces ourselves, and then lead them around the arena and pasture. Horses live in the moment and are not hindered by the past or by the future, and observing them being their authentic selves reminded us that it was important to do the same thing.

Carla giving us our hula hoops

We discussed many things over the weekend, so much so that I really can’t put everything on here without either breaking confidentiality or filling up our entire blog with only one post. But one thing that really stuck with me was the “Hula Hoop” lesson. Seven hula hoops were placed in the arena and we were each asked to step in a hula hoop. We were told, “You can only control things that are inside your hula hoop. You can’t control other people’s hula hoops. You can link with another hula hoop, but you shouldn’t become another hula hoop.” It was like a light bulb had gone off. We all started discussing things in “hula hoop” lingo… when ever someone started to discuss something out of their control, it was ask, “Well is that in your hula hoop?” It was a life lesson that we are all continuing to apply to our lives after the retreat.

I was not sure what to expect from a retreat and could have never expected the tight bonds that grew from the experience. It was great to connect with other women who are going through similar experiences. There was a lot of laughter, a little bit of crying, and there were relationships that I know I will have for a long time as we continue our journey with PTSD/TBI. We have kept in close contact in the past week and I know that if I had any questions or needed some support, I could call one of the women for a sympathetic ear, life-experience advice and a reality check for my “hula hoop.” The program said that they would like to do retreat “reunions” in the future, and I definitely hope that will become a reality.

Working on maintaining my Hula Hoop

As I have started to implement what I learned on the retreat at home, I have already seen a difference in our home. I did not realize before the retreat that I was stuck in “crisis” mode and I didn’t know how to move on from everything we have been through in the last two years. The retreat really wasn’t not about JR and PTSD, it was about me and how I approach and deal with the situations at hand. I’ve now become very zen about situations and when something happens, in the home or outside of the home, I am learning to only control things within my hula hoop and I cannot control the actions of others or things that are out of our control. JR has appreciated this change in attitude and I think that we have both been calmer since I got back from Florida. I also expressed to JR how thankful I am for him and all the hard effort he has put into recovery. Now that we are both on board with continuing recovery and moving on from the crisis situation to education and advocacy, our outlook is looking good.

Thank you to Operation Homefront, Quantum Leap Farms and At EASE (Equine Assisted Self Exploration) for giving us so much! We hope that more wives get the opportunity to participate in the future! And to my new ladies…we’re in this together, both with our spouses and with our new found friends. Here’s something only you ladies would understand: May you continue to maintain your hula hoop, dump your bucket, and returning to grazing!

JR numbs his headache pain with frozen veggies, he is particularly fond of cauliflower.

Tonight, I’m watching the finale of Lost and JR is sitting next to me in his recliner, asleep. Underneath his neck is a frozen bag of mixed vegetables. He has a major headache tonight. He always has a constant headache, usually a 3 on the 1-10 pain level used by the military and the VA. It fluctuates from a 3 to a 10. At a 3, he can tolerate the pain, go on with his daily business. When the level raises, his resistance goes down. Tonight it went up to a 10…

It is difficult of me to watch him suffer, as it is with any spouse who feels helpless when a loved one is in pain. It seems to me that there has to be a solution. We go to the VA at least once a week if not more, searching for answers and we often leave empty handed. In regards to his headaches and TBI, we often hear, “Don’t worry, you’ll get the claim,” – a reference to the TBI disability claim that we filed last year. I wish they could understand, it’s not about the money. We just want help. We just want to know that one day, JR will wake up with no headaches.

Often our posts on this blog are informative and/or light hearted. Life is not always like that. We try to focus on the positive, but sometimes this TBI/PTSD interferes. For example, today we won amazing tickets to the Dodgers at a local church bazaar. We were overjoyed because the tickets our on our 1st anniversary. And then the level 10 headache occurs and brings him down physically. We just thought we should be honest with our PTSD/TBI struggles. And don’t get us wrong… it could be worse and we are thankful that JR has mild TBI, and is not a severe case. I just can’t help but wonder if we sought solutions in the private medical sector, would we have better results? We can’t really afford the private health care required for TBI, leaving the VA as our primary health care. We are doing Neurofeedback thanks to the generosity of our clinician Kimberly Smith (for more on that, please see our original post here) which is helping with the PTSD, but TBI may require more medical care.

We know we aren’t the only ones dealing with these TBI symptoms including headaches, fatigue, memory loss, difficulty concentrating, depression, etc. We recognize these symptoms so it is a little baffling that the doctors don’t seem as concerned as we feel they should be. They tell us JR has mild TBI, but have yet to offer a solution (we know there may not be one) or a recovery plan (physical, mental rehab?).

If anyone has any information on mild TBI or navigating the VA, we would love more information. I research every aspect that I can and will continue to research, ask questions, and find answers. Not only for JR, but for all the other veterans that are experiencing the same issues.

Via our Twitter account (PTSDdiary), we came across an interesting find called In Their Boots. According to their website,

In Their Bootsis a documentary series about the impact the wars in Iraq and Afghanistan are having on people here at home. Every episode features a documentary about how America’s servicemen and women, their families, and our communities have been profoundly changed by our nation’s campaigns in Iraq and Afghanistan. Shot on location throughout the country, these stories stress the courage of our participants, and the valor of the people and organizations that help our heroes on their journey.

I have to tell you, I cannot watch an episode without getting emotional. I think what this crew is doing (Meet the Crew) is simply amazing. These episodes are a valuable resource for both those suffering from PTSD/TBI, and for those loved ones who support them. As a loved one, I felt a connection to both the veterans and the family members in each episode, and recognized aspects of our own struggles.

I would highly recommend checking their website and the episodes out. Two episodes in particular stuck me as extremely personal: “The War Within” and “When He Came Home.”, although to just pick a few would do an injustice to the site. You really have to watch each and every episode to get the full spectrum of what these men and women are experiencing when they return home. What I love about their episodes, is that they have covered such an array of subjects. Too many times, there is a focus on statistics and studies. These documentaries show the heart of why PTSD is such an issue of epidemic proportions. Their website also has an excellent list of resources that we are continuing to go through for more information. Check it out and let us know what you you think.

We sent out a press release for the Front Line PTSD/TBI conference that JR is speaking at on Saturday, April 10th. The local newspaper, The Bakersfield Californian, published the press release (but changed the title). It is exciting to see JR’s name in print and we hope that it will encourage others to come out to the conference.

UPDATE: JR, with Kern County NAMI pres. Russ Sempell, will be on the local NBC affiliate Channel 17 to discuss the event on the morning show at 5:50am on Friday, April 9th. If you’re awake that early, check it out! We will post the interview when it becomes available.

If you are in the Kern County area, we hope you can join us this Saturday, April 10th. JR will be speaking in regards to his neurofeedback treatment and PTSD. There are lots of great speakers and we are looking forward to participating in the event!

Here’s the info from the Media Release:

WHAT:

PTSD/TBI Educational Seminar

Presented by NAMI Kern County’s FRONT LINE, Free and Open to the General Public

WHEN:

Saturday, April 10, 2010, 9am-12noon

WHERE:

Good Samaritan Hospital, 5201 White Lane, Bakersfield, CA 93309

Located in the Gymnasium on the west side of the facility

Local Veterans Come Together to Learn about PTSD/TBI

Educational Seminar presented by NAMI Kern County’s FRONT LINE

BAKERSFIELD — The country is facing an epidemic of returning combat veterans from Iraq and Afghanistan suffering from PTSD (post-traumatic stress disorder) and/or TBI (traumatic brain injury). However, PTSD & TBI is not just a recent issue; it has affected veterans from all wars including Vietnam, Korea, WWII, and other conflicts. Veterans and families alike are lost, confused, and looking for answers on how to address this growing problem. NAMI Kern County’s FRONT LINE recognizes the need for recovery, education and advocacy for veterans and their families and has created an educational seminar open to the general public.

The April 10th seminar will feature a variety of speakers including the personal stories of local veterans, clinicians and representatives from local VSO, Vet Center, and the Kern County MET Team. West High School’s Color Guard will open the seminar with the presentation of the colors. Kimberly Smith and Iraq veteran J.R. Browning will report on their progress with using neurofeedback to combat PTSD and TBI. Vernon Valenzuela will provide information on the upcoming Vet Center. Iraq veteran Chris Allen will share his story and experience dealing with being injured in combat and suffering from PTSD. Juanita Buck of the Kern County MET Team will discuss how her team is learning to deal with veterans and the law. The closing presentation features a TBI PowerPoint presentation by Iraq veteran Denita Hartfield and VSO representative Mike Penney.

Join us in the fight to combat stigma and help educate veterans, their families, and the general public on this pressing issue. The seminar will be held on April 10, 2010, 9am-12noon, at the Good Samaritan Hospital, 5201 White Lane. The seminar is free and open to the general public. For more information on NAMI Kern County’s FRONT LINE: frontlinenami.org.

Check out the Event Page on Facebook to RSVP to the event. (RSVP is not required to attend)

Neuro-what? That’s what we first said when we heard about this alternative treatment. The wonderful Front Line co-founders, Russ and Patrice, introduced us to neurofeedback clinician Kimberly Smith. Through a grant from Homecoming for Veterans, Kim was able to offer us her services to help JR with his headaches and PTSD symptoms. After some thought and research, we decided to go ahead with this alternative treatment and have attended 20 sessions. We are seeing some results, but it will likely be a long journey to recovery. Luckily, Kim is willing to dedicate her time and expertise.

According to her website,

Neurofeedback, also called EEG Biofeedback, is a learning strategy that enables a person to alter their own brain waves. Thus, neurofeedback can be referred to as brain exercise or brain training. Neurofeedback is training in self-regulation. Good self-regulation is necessary for optimal brain function. Self-regulation training enhances the function of the central nervous system and thereby improves mental performance, emotional control, and physiological stability.

Neurofeedback has been used to treat or aid numerous issues including: ADD/ADHD, Anxiety, Chronic Pain, Depression, and much more. Our questions was, “But what can it do for PTSD?” We learned more about by watching the video below:

During JR’s first 20 sessions, we have seen a reduction in the number of major headaches JR has experienced. They are not gone yet and he still has some major ones pop up once in a while, but we hope that we will see more success as we continue our Neurofeedback journey. Any questions about the treatment, feel free to contact us or Kim through her website: kerntyb.com. We will continue to update on JR’s journey with Neurofeedback and hopefully will be able to report good news!